Summary of Lupus Congress 2017 – DAY 3

I was not able to attend a lot of the scientific lectures on the last day because the Patient Program was running at the same time.

Here are the summaries:

A. Selecting the right outcome measure is very important in ensuring that Lupus Clinical Trials can lead to meaningful and successful conclusion.

using definition of “remission” as described in 2 studies: DORIA and DORIS studies.

rheumatologists and other specialists who are involved in managing patients with Lupus could move towards providing “target therapy”

target a particular value that the patient agrees as a place in which she would be comfortably leading her own life with Lupus.

different measurement can be used; such as using the SLEDAI, SLEDAI-2K, BILAG (explanation here), even though these are currently used exclusively in clinical trials, not so much in clinical settings.

using LAD – Low Activity Disease, or LLADS – Lupus Low Activity Disease State; should also be considered as one of the treatment outcome in clinical trials as well as clinical practice.

Dr Mandana Nikpour and the Asia Pacific Lupus Collaboration is leading the study so that a consensus definition can be reached and be useful in clinical trials and clinical practice management of lupus.

So far they have seen that there are more LLADS patients in “affluent countries” and this seems to correlate to better access to medications and treatments.

this was a very short presentation… i wish she would expand more, but the program was quite packed… she talked about a few major food products that she found to give most positive effect in her patients who has autoimmune conditions (not specifically Lupus)

Curcumin (active ingredient in Turmeric); has a higher toxin neutralising effect when compared to Vitamin C and Vitamin E alone, in mice studies have shown to decrease the progression and severity of arthritis, curcumin supplementation is required as a treatment target for a specific condition, different dose is required depending on individual case, just simply cooking with cumin is a good start, but usually not enough to result in “remission” or improvement in patients’ medical conditions.

Lupus patients who are pregnant should be followed up regularly and monitored by a team of doctors; it is recommended also to attend the tertiary centre at the later stage of pregnancy so close monitoring can be done (meaning you will be admitted to a hospital for the remaining duration of your pregnancy til you go into labour)

D. Cardiovascular risks in SLE by Dr. Ian Bruce

Lupus patients developed cardiovascular problems 10-15 years earlier than the general populations

Increased build-up of fatty and calcified deposits in the blood vessels (Atherosclerosis) which impaired the function of the blood vessels; becomes stiff and not able to pump blood as effectively to many areas of the body/organs. This problem seems to be found at a younger age in people in Lupus!

Hyperlipidaemia – high cholesterol levels, fat deposition around the waist (apple shaped) are also very common problems in Lupus patients

this propose an awareness that inflammation changes the way FAT is metabolised in lupus patients

Good news is, Plaquenil appears to have a protective effect in reducing cholesterol levels!!! (Yipeee! At least something good about the drugs we are taking!!!)

OKAY! By this time, I was really starting to struggle… the migraine and brain fog were setting in… so,,, just a very quick summary on the rest of the session.

E. Clinical Trials

Two presenters who came and presented the talk, ended their talk with an invitation for all patients to join trials!!!

If you are interested in joining clinical trials, please make sure you read and understand the implications of the studies properly before you are signing up for it.